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The Internet is helping people take charge of their health care. But what are the benefits and the pitfalls? A mother with a sick child and a family physician offer their perspectives.

The Web is helping Julie Drury manage many aspects of her daughter Kate's undiagnosed and complex disease.

Health care is undergoing a quiet revolution thanks to the Web. In a 2010 CBC survey, 41 percent of Canadian adults polled said they consult online sites for information about a specific disease, medical issue or health product. And 67 percent of the time, they trust the information they're getting. This is a radical departure from the past, when patients would come to the clinic with a list of symptoms and expect the doctor to take it from there.

The Drury family is on the front lines of this revolution. Kate Drury is a blond cherub of a child who loves to sing, although some may think that she has little to sing about. The three-year-old has a yet-to-be diagnosed and life-threatening illness that affects her immune, blood, gastrointestinal and neurological systems.

The doctors suspect that it is a mitochondrial disease (mitochondria are the “powerhouses” that produce energy needed by cells to function), but have not been able to confirm this diagnosis. The condition has sent Kate to emergency rooms more than a dozen times in her short life, made her deaf, and left her with scarred veins from countless IV needles and blood draws.

Managing Kate’s health care is a full-time job for her mother Julie. More than 15 specialists work on Kate’s case at her local children’s hospital, and each week brings a gauntlet of appointments and tests. As well, concerned family members and friends want to know how Kate is doing. All in all, Julie has a daunting amount of information to juggle.

Researching and communicating

Like many Canadians facing illness themselves or in their family, Julie has turned to the Web for support. She has spent long hours researching Kate’s many symptoms. Julie, who has a background in human kinetics, is familiar with medical lingo and this gives her a real edge in sifting out the good information from the bad online.

Just recently, concerned about Kate’s brittle hair, Julie came across “pili torti,” a rare condition that affects the hair and, as it turns out, is linked to both hearing loss and mitochondrial disease. Julie texted this lead to Kate’s doctor, who is following it up in hopes of finally pinning down a diagnosis.

The Internet has helped in another important way. “It has lifted a huge weight from the family in terms of keeping everyone informed about Kate’s status. We don’t have to keep repeating the same information over and over again,” says Julie, who regularly posts updates and pictures on Caring Bridge, a simple-to-use, free site that helps people facing illness share their news.

If Kate is going through one of her rough spells, “our friends read about it online and know this is a time when we need help,” says Julie. “That’s when the meals and offers to babysit Kate’s brother start to flow in.”

One place Julie won’t go on the Web, though, is to discussion groups about mitochondrial disease, of which there are many. In her experience, “that’s where the snake oil people tend to hang out, and the information is erroneous or just plain nutty.”

Doctors as curators of credible sources

“When it comes to getting credible information, patients are still better off seeing their doctor,” says family physician Dr. Michael Evans. As Director of the Health Design Lab at St. Michael’s Hospital in Toronto, Dr. Evans is researching how best to deliver evidence-based medical information through media that people commonly use, including the Internet, television, telephones, social networks and e-mail. Even so, he does not believe the Web will ever replace the clinic relationship. “It’s basically a new set of tools that doctors can use to add value to their interaction with patients.”

Dr. Google: discretion advised

Be prepared for very bad news if you type your symptom into Dr. Googleand click the "I'm Feeling Icky" button. If you have a sore throat, you'll be sent to a page about amyotrophic lateral sclerosis (commonly known as Lou Gehrig's disease). A stomach ache will lead you to a page about heart disease, and so on. It's a worst-case scenario for the most innocuous of symptoms. Clicking the "Second Opinions" button instead will lead you to a broader range of sources about the symptoms.

One thing is clear. In this new world of patients empowered by Web-based information, Dr. Evans says that it’s up to medical professionals to become the curators of credible information. Increasingly, doctors will have to winnow out the useful information on the Web for their patients. “I doubt they will have time to steer patients away from all the bad sites and misleading miracle cures out there, but at least they will be able to drive them to the best resources in their area of interest,” he says.

Dr. Evans thinks that the Web provides a fantastic opportunity to learn, but that it’s better to do so post-diagnosis, guided by a doctor. Few people have the background, like Julie Drury has, to sift through complex medical literature. “Most people will get into trouble with self-diagnosis,” he says.

In fact, the Web is creating a major new headache for doctors. “Cyberchondriacs” are finding a wealth of worst-case scenarios on the Web to explain the most innocuous of symptoms. It’s then up to their doctors to defuse the situation.

Bringing new communities together

The Web is dramatically redefining our sense of community, allowing people with common interests from all over the world to band together to share information. This is especially powerful for people with rare diseases.

Where there may be only a handful of fellow sufferers in any geographic centre, the borderless Internet can create an important critical mass. “My patients with rare diseases now have access to so much more information,” says Dr. Evans, “and often know more about their disease than I do.”

Online peer support

There are many sites where patients share their experiences and coping strategies through videos and blogs. The Truth of It is a powerful series of films, hosted at Cancer View Canada and also available on YouTube. It features 40 Canadians with cancer reflecting on their journey, providing insight on everything from how to tell your kids to how to be your own advocate.

And it’s not only the nuts and bolts of a disease that can be found online. The social networking site “PatientsLikeMe” allows its 80,000 contributors to post data about all aspects of their disease, including the effects of medications or treatments. Taken as a whole, this bonanza of data could have powerful implications for tracking patterns linked to a disease and responses to various treatments.

Without a doubt, the Internet is fundamentally altering all aspects of health care. In these early days, the passive patient of the past is being empowered with online information and tools that enable increased interactivity with both medical professionals and other patients.

Indeed, we are all on the front lines of this quiet revolution, which is fundamentally transforming the patient-doctor dynamic, with patients playing an increasingly active role in their diagnosis and care, and doctors guiding them to credible information.